Feel like Crohn's is winning...
Wed, August 11, 2010 10:15 AM
I'm 24, and have been sick for over 2 years, although it has been just in the past couple months my doctors have felt confident enough to say I have Crohn's. I also have a hiatal hernia, acid reflux, and some esophagus allergy with a really long name. I practically live at the doctor's offices - lab staff know me on a first name basis. I've had cat scans, allergy tests, x-rays, probably drawn the amount of blood in my body several times over, endoscopies, a colonoscopy, a capsule endoscopy, you name it, I've had it done. I've been on Pentasa, which gave me allergic reactions, and mercaptopurine, which makes me nauseous. I also take prilosec, and am supposed to be on a steroid inhaler, taking 4 allergy pills a day, and now have added entocort to the pharmacy of things I take. It just doesn't stop, ever. My throat hurts, I've lost more than 20% of my body weight from my inability to eat and keep anything down. My stomach hurts, my chest kills, and on a given day I could be having any variety of lovely side effects such as dizziness, dry mouth, lightheadedness, and I'm ALWAYS tired. Plus now I'm immune compromised, so I turn up with flu, bronchitis, and various other infections in between. I have to hold down a full time job to keep my insurance and on top of bills - I cannot live on 60% of my salary if I were to take disability. I wake up nauseous every single morning. I think I could tolerate the rest if I could just get some relief from the nausea and vomiting. I feel like Pavlov's dog - like I'm developing a psychological aversion to eating bc of the repeated vomiting. I've got my PCP, my GI, a specialist, an allergist, and a chiropractor all stumped on how to force me into remission for a while. I've gotten some anxiety pills to help me sleep, but then I feel like a zombie in the morning, and it's just another pill. I've tried seeing a therapist, but I don't think she understands.
rachelp1985Joined Mar 22, 2010
Wed, September 01, 2010 1:51 PM
Reply posted for rachelp1985.
Hi Rachael,
This is a late response, but maybe will give you some help. I am the nausea queen - and already posted this on another board - but there ARE drugs they can give you to help the nausea. Fenegren, Zofran, and Compazine have all worked for me. Sometimes they reco Omeprazole (40mg of Prilosec) to help w/ nausea but it just works on acid in the stomach. I take Effexor (which is pretty mild) for stess and anxiety and def don't feel like a zombie. I was also very lucky to have a good therapist when I was diagnosed a few years ago in my late 20s. During my first flare-up she reco'd I might need a therapist that specializes in chronic illness or pain - maybe a new therapist could help?
Take care,
J
jmichelleJoined Sep 1, 2010
Wed, August 25, 2010 2:24 PM
Reply posted for rachelp1985.
Rachel- I totally understand what you are going through, I am a 30 year old female with Crohn's disease. I was a healthy, normal, young woman until about 4 years ago. I started seeing blood in my stool, and was running to the bathroom all of the time. It just came out of no where! After that I was in and out of the hospital staying for months at a time. I was working at a job as an Exec. Asst for over 4 years but the sicker I became the more work I would miss. I had most of my colon removed and had to have a colostemy bag for 6 months! That really put a cramp in my dating life let me tell you LOL! Eventually I was "hooked back up", but have never been the same. I was let go from that job and my COBRA ran out. I am now at a new job but there is no insurance plan here and since I have Crohn's I can't get my own policy. It really sucks! I was just in the hospital a few weeks ago for this flare up that won't seem to go away. I had several blood transfusions while I was there, as well as my iron fusion, and other medications. As you can imagine it costs a fortune! I just send in monthly payments and do what I can. But I am tired all the time and feel like crap...I try to work out when I can that seems to help. I also try and keep a positive attitude. I always think how much worse it could be and be thankful for what I have. Stressing out definetly makes it worse
sarahkJoined Aug 24, 2009